Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Monday, September 29, 2008

A Duty to Die

About a week ago Baroness Mary Helen Warnock stated in an interview that people suffering from dementia have a duty to commit suicide. According to news reports, Warnock is called the "philosopher queen" and is regarded as Britain's leading moral philosopher. I think of her as the British version of Peter Singer, a person that would advocate the killing of a host of people.

I vowed last week I would not comment on Warnock. People like Warnock and Singer deeply upset me. I was really troubled by Warnock's interview with the Church of Scotland's Life and Work magazine where she stated: "If you're demented, you're wasting people's lives--your family's lives and you're wasting the resources of the National Health Service." This comment is offensive enough but when I read about another article in a Norwegian periodical entitled "A Duty to Die" I became even more incensed. Warnock suggests "There's nothing wrong with feeling you ought to do so [commit suicide] for the sake of others as well as yourself. In other contexts, sacrificing one's self for family would be considered good. I don't see what is so horrible about the motive of not wanting to be an increasing nuisance".

Warnock's views are not unusual. There are other prominent members of Britain's House of Lords that advocate euthanasia. The same can be said for some states in America--Oregon springs to mind quickly in terms of the euthanasia debate. What I find dangerous about people like Warnock and Singer is not necessarily their views. They have the right to state whatever they think just as I share the same right. What worries me is Warnock's academic position--that is her position carries a great deal of prestige. This prestige can give a certain moral and academic authority to their views that are not warranted in my estimation. Some bio-ethicists add a secondary veneer of legitimacy to the views of people like Warnock. Based on my experience, the only people that have the moral authority and personal knowledge to make life and death decisions are the those directly involved. Here I refer to the person whose life is nearing the end, doctors, family, clergy, and loved ones. Even under the best of circumstances end of life decisions are fraught with anxiety and uncertainty. How Warnock can make such questionable statements is beyond me. But I am glad she is not in the position to make any real decisions regarding life and death. Had she been in such a position when I was a child I may not exist today.

13 comments:

Personally, I'm in favour of legal euthanasia - once all possible medical and social remedies have been exhausted. We're a long, long way from providing good care for the sick and/or dying, and ameliorating suffering *in life* needs to be given a vastly higher priority than ending suffering via death. When doctors are scared of giving sufficient pain relief to dying patients because they might be arrested for "hastening death", something is very wrong.

It's pretty easy to see the direction "duty to die" takes us. Scary, that so many people are willing to entertain the same ideas that celebrated by the 3rd Reich, and that they do it with so little condemnation.

Yanub, Yes, it is painfully clear that the "duty to die" is a scary idea in contemporary society and historically. Why seemingly intelligent people are driven to enter into this debate is hard for me to wrap my mind around. The potential societal abuses are significant.

Illacsigll, Euthanasia is a personal choice for some. I also think this already takes place in hospitals. I see no need for legislation or providing social sanctions that support euthanasia. Being a doctor is a tough job and I have no doubt some MDs worry about "hastening death" or being sued. To me this is a social failure. Doctors and families need to establish a better relationship so they can put the needs of the sick person ahead of their own. As people live longer and face increasingly complex end of life decisions the need for a close or at least working relationship between a family and an MD is sorely needed. Sadly this sort of relationship is becoming less common and creates a host of ethical problems for many.

I have worked with people who have dementia diagnoses for many years and the idea of extinguishing these folks because their mentation has changed is cruel. The changes are often difficult for families to watch, but lives remain valuable, not a nuisance (if you know how to relax and work with people.) They live completely in the moment--often based on information from the past. They teach us all.

Terri, I cannot imagine working with people who have dementia on a regular basis. I thought the way your worded the change in the cognitive ability of those with dementia was interesting--a change in their mentation. This is a non judgmental word. My experience with dementia is limited and heart breaking. My father had dementia and it was hard to see such a brilliant and proud man lose his independence and ability to reason. The only positive thing I took out of my experience caring for my father toward the end of his life was the knowledge that some people in the health care system are dedicated and superb at caring for people with dementia. I tremendously admire those that cared for my father and enhanced the quality of his life when he needed support at multiple levels. It is impossible for me to thank these people enough. Simply writing this brings tears to my eyes as it will be three years since my father died this month. I miss him more today than the day he died.

Independence is highly valued in our culture - embedded in the beginnings of the country - eh, BC? However, being personally independent (contributing to society - by some economic measure) should not be the threshhold for life. The potential for 'significant societal abuses' yes.

I wish to point out the benefits to humanity of those who might be or become dependent on others - expressed by both Terri and BC regarding persons with dementia. WE, each of us, benefit from giving care to someone else. Persons who don't, can't give to someone else in an overt way have a reduced understanding of relationships among people. All people. Barbara

Barbara, As always you raise important and larger issues. Independence is indeed valued in out country. In my estimation independence is admired to a fault for those that are not independent at multiple levels are often stigmatized.

I do not know what more to add about dementia. I know I made a concrete contribution to my father's life as it neared the end. I was glad to do this but wish I did not have to see him agonize over his lose of cognition. This is all to fresh in my mind to sort out as still mourn his death.

In regards to your last sentence in the post: I am very glad you exist. I find that the right to die argument is increasingly turning into a duty to die argument. It is indeed similar to the 3rd Reich.

Frida, I am happy to be alive and value my life. I sincerely hope as I age and become frail that the MDs assigned to treat me also value my life. I truly worry about how and whether I will be treated when ill. Do I garner the same social respect as a man that walks into a hospital? In a word, no. This is a big problem, one that worries me as our culture seems to look at cost and humanity with equal weight in the health care system. The idea that some have the duty to die is creeping into our collective thought process even if a law enforcing it has not been passed. Based on my experience, end of life issues are never easy. Many of us are living longer but at times I wonder if we really alive. Thus I understand why some MDs are frustrated but that does not give them the right to play God and decide who lives and who dies.

I just readabout a campaign in UK that in a word-byte combines issues of both disability and end-of-life issues. You might want to check it out: http://thefamilyvoyage.blogspot.com/2008/10/nas-i-exist-campaign-in-ni.html.

TherExtras, I had not heard of I Exist before. It appears to be an excellent title and media idea. It is amazing to me how much British society has changed in the last 25 years. While the disability rights movement moves at a glacial rate in the USA, Britain consistently produces disability rights campaigns of substance that are often effective. This is a shock to me as I lived in London many years ago (!988) and was stunned by the blatant stigma I encountered as a person that uses a wheelchair. I wish the USA was as progressive and willing to acknowledge disability rights as civil rights.

Back-up here, BC. It was a woman in Scotland who prompted this post. "Britain consistently produces disability rights campaigns of substance that are often effective." Evidently the campaigns do not influence everyone.

I haven't been to UK in over 30 years, but accessibility takes on a whole different light in buildings that are hundreds-of-years-old.

I could go on and on about cultural shifts, but I've got to get to a patient home visit.

Therextras, I stand corrected. Scotland is indeed different. The British and Scottish cultural response to disability is quite different than in the USA. This is the point I was trying get across. Disability rights advocates in Britain have not swayed all but they sure have made remarkable progress when I look back on my experience in the 1990s. As for accessibility, historic buildings do present challenges. However, the biggest obstacle to access is not architecture but the social value placed on access.